A mom on social media smugly remarked that her daughter had never used an ipad or iphone. Well, good for you, rang in my head. See, an ipad might seem like a ridiculous toddler indulgence to her, and I agree it still can be (for sure), but the absence of an ipad is luxury to me.

I don’t know if I’ll ever forget the looks of shock Keith and I exchanged in our early days with the ipad. Just for fun, Keith bought one app and showed it to Henry. The next thing we knew, Henry was interacting with books and his fingers were flying through Memory games, the very same games he ignored unplugged. As he sped through the levels, we simply gaped. There was no turning back. Matching games, animals sound games, alphabet games, number games, drawing games, train-building games. You name it, he loved it.

And then there was the day I said, “Holy cow, is he… spelling?” Our little guy, who could barely put a sentence together with his mouth, was using the ipad and his fingers to spell.

As we were learning the value of pictures for the autistic brain, we were also struggling with bedtime. Keith created a simple visual schedule on the ipad with four pictures of Henry’s bathtub, toothbrush, books, and bed. That evening Keith showed Henry the pictures and clearly, firmly declared, “Bath. Brush. Books. Bed.” Bam. Henry was going up the stairs without complaint. We stared at each other. Could it really be that easy?

We’ve read and watched the beautiful stories of nonverbal folks who now speak with an ipad, unlocking what has been tucked within, in some cases, for many years. We’ve cried along with the parents who discovered their children’s personalities for the first time. For us the need for the ipad is not quite that dramatic. But here’s what it does for us: We no longer have to be terrified of dining out with friends and family.

We eat out very infrequently, turning down most invitations and choosing to cook at home or have take-out when it’s just the three of us. But, when we must, we don’t carry fear with us. We can pull out the ipad if the wait becomes too long and/or Henry’s sensory needs are exploding.

Many aspects of the device are a luxury. He doesn’t need to watch YouTube videos of the dude in New Zealand doing Thomas reviews. On the other hand, the ipad is an absolute necessity. Denying access to his ipad after 30 minutes waiting on food in a restaurant would be like taking away another kid’s crayons.

I didn’t plan this. In fact, I planned the opposite. I bought the handmade crayon roll, ready to whip out of the bag at a moment’s notice. I had the purse-sized coloring and activity books. I tucked the tiny Toy Story figures into his diaper bag so he could act out stories. Yes, I was the typical mom.

But I don’t have a typical kid, so I had to stop being a typical mom. My son would rather be ninja-kicked in the jaw than forced to color. And playing with little figures? Um, no.

Autism changed my definition of luxury, just as it changed everything else. And I do mean everything. An expensive piece of technology for a 3-year-old? No. My little guy spontaneously pulling out an activity other than trains or the ipad?

Yes.

Please believe me when I say that technology addiction is a real challenge, but this truth does not negate the other truth: we would never enter a restaurant without it.

We’ve seen stares and heard ugly comments, to be sure. In their shoes, without any knowledge of the situation, I wonder if I would judge too. This is why I’m open about our struggle:

I want to help the judgers. I want to provide just the smallest glimpse into our lives so others can acquire understanding and empathy. How can they know if we don’t tell them? Judging is never acceptable, but I do understand how it happens; we’re all tempted to do it.

So, the next time you see a child with a device in public and start to blame the parents, just pause. Consider the fact that maybe there’s a reason. Maybe this is one of five times a year the family is served a meal in a restaurant. Maybe it’s not. Maybe the kid is a brat. But will your judgement change that?

Allow the pause to change you. Doesn’t empathy feel good?

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 8-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

Scene 1: Henry whispers to me that we can just learn about Jesus in our own Bible at home. I whisper back that an important part of our faith is being with others who love Jesus. This is all I can say in the middle of the service, but I’ll add more later. I’m discouraged.

Scene 2: I watch Henry put away his puzzle books, move to the edge of his seat, and fix his eyes on our pastor breaking the bread and pouring the grape juice. This is the moment of the service that encapsulates his senses and touches a place inside him that only God can reach.

Scene 3: We’re in the car.

“Henry, what did you learn about today?”

“A boy’s lunch.”

“What did Jesus do with the boy’s lunch?”

“He fed other people.”

“Yes, a lot of people! He only had a few fish and a few loaves of bread, but he fed more than 5000 people. When he broke off the fish, there was always more. It was a miracle.”

“I KNOW, right?!”

*****

I’ve been concerned for Henry’s understanding of God since the diagnosis. No, I’ve been concerned longer than that. It is the single-most important piece of my parenting, that I do my part in showing him the Gospel. In the end, it is his choice to believe. I can’t choose the Way for him. Still, I know his belief largely depends on ours and what we teach him about our Lord and our faith. The responsibility has, at times, felt heavy.

It feels heavy in moments like Scene 1 above.

But then we have moments like Scenes 2 and 3. That day was unusual, seeing them all in the expanse of 2 hours, but those holy moments always come if we wait long enough.

We’ve waited on so much. The breakthroughs always come.

Are you waiting on someone? Some situation? Some answer? Patience, friend.

As you take your next right step today, trust that God won’t let you miss your own future.

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 8-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

According to Google Analytics, these were my most viewed posts in 2017. Keep in mind these may not be the ones that resonate most with you, but I thought it might be helpful to know where to start if you’re new around here.

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 8-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

The night I learned my beloved pastor was leaving for another position, the air left my lungs. It was like the time my friend pushed me on the monkey swing and my back landed squarely with a thud against the large tree trunk.

As I tried to tell Mitzi how happy I was for her, the sobs rolled in. I could not stop no matter how much I wanted to. Her departure was a shock. Our congregation adored her. In fact, she wasn’t looking for a new position; the dream job came to her.

I choked out, “I promise I am happy for you. The position sounds perfect. I’m just so sorry for me.”

As awful as I felt that night, another surprise awaited me. The very next day I learned Carl, our lead pastor, was leaving too.

BAM, another thwack against the tree. My breath left me again. While his departure was not as shocking (we’re Methodist and he was with us for 10 years, after all) and not as immediate, I loved him too, and the double whammy was just too much.

It’s so easy to understand in hindsight, but over the next few weeks I found myself irritable without knowing why. I struggled against the temptation to be snippy; I sensed my fuse was short. Then, in our church’s last week with Mitzi, my feeble mind finally realized: Ooooooh, I’m grieving. My body’s response to grief always catches me by surprise.

So, I did the one thing I knew how to do. I prayed. I prayed for Mitzi and her family. I prayed for the hundreds, if not thousands, of lives she would touch in her new job. I prayed for our church, for God’s best for us, for us to open our hearts to our new ministers. I prayed He would send us gifts we didn’t even know we needed, much as He had before.

Last, I prayed for God to help me. God, help me not to compare the old and the new. Help me to remember your ways are always perfect. Remind me that you wouldn’t take Mitzi and Carl from us without great plans in store. And, God? I’m selfish. Heal my heart.

***

The first time I met with Tobi, our new Pastor of Discipleship, my heart’s crack closed up just a smidge.

When I met Justin, our senior pastor, for the first time, the crack closed some more.

During his first Sunday sermon, I could not stop my face from smiling.

I went home and wrote these words:

“I’ve seen a peek at our church’s future. It is good. It will be new, exciting, and (in some ways) likely hard. With fresh faces come fresh ideas. My years have taught me to embrace change rather than wince through it. Grieve the old, yes. But withdraw from the new? No. These faces, these ideas are needed even when we don’t know we need them. They are welcome here.”

***

The fact I miss Mitzi every single day does not negate the sincere thankfulness I feel for Tobi. I’ve had the pleasure of spending time in her home every week for the last few months. I’ve fallen in love with Tobi’s family, especially her two daughters.

Some weeks ago, when Tobi shared that she and her eldest were traveling to Chicago to see Hamilton, I gushed over the news. I may have squealed right there during Bible study. I’m a fan of Lin-Manuel Miranda (since way before Hamilton), a word nerd, a theater lover, and a music geek. This was just glorious, enviable news!

One night in December I entered Tobi’s home and chatted with the family before the other Bible study gatherers trickled in. While the younger daughter brushed her teeth, I asked the oldest about her trip to Chicago and what she thought about Hamilton. She raved (of course) and then she presented me with a small gift.

BAM, my back hit the tree trunk.

They remembered me. On their special mother-daughter weekend, they thought of me.

I hoped the dim light of the Christmas tree wouldn’t betray my eyes. How to tell a ten-year-old and her mother why I’m holding back tears over a Hamilton pin? How to explain that grief has morphed into gratitude? How to share what it feels like to be seen?

I spend my energy making sure Henry and other special children are seen. When I volunteer in his school, I take special care with children who seem neglected, overlooked, or misunderstood. This is my calling and it is my pleasure.

But I forget what it feels like for someone to see me, and I admit it feels good.

It feels even better to be seen in the most unexpected of ways. So, I will wear this pin with as much pride for Hamilton as for the lovely ladies who saw the pin and thought of me. I wear it remembering my prayer: Healmy heart.

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New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 8-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

Originally published December 2012, my thoughts then aren’t much different from today’s.

Darling Henry,

I always wanted you. Even as a little girl, I knew I wanted to be a mommy. When I was pregnant with you, the devil attacked this deepest desire, where he knew it would hurt most. I battled daily the fear of one thing. Some parents fear disorders, disabilities, or illnesses, but not me. I was afraid I wouldn’t love you.

I have a lot of faults, my love, but that is not one of them. I hope you know this. I hope the ridiculousness of my fear makes you laugh.

Right now you are 3-and-a-half. Your marvelous brain presents us with joy and wonder, yet we are also challenged to understand you. But, Henry, I want you to know we are doing everything within our knowledge and power to change that. We read, we listen to your therapists, and most importantly, we observe you. You are our most important teacher.

Sweet Henry, I’m afraid I fail you more often that not, though it pains me to say this and I pray you will not notice my failures. I pray you will always feel the depth of my love and know it has driven every decision I’ve made as your mom. You are my greatest gift.

Though I will certainly continue to fall short at times, I want you to know I’ll always be here for you. These last few months, a song about another special little boy has been my love-song to you. To end this letter, I’m going to borrow his daddy’s words.

You’re gonna have all of me
You’re gonna have all of me
‘Cause you’re worth every falling tear
You’re worth facing any fear
You’re gonna know all my love
Even if it’s not enough
Enough to mend our broken hearts
But giving you all of me
Is where I’ll startEven if it’s not enough, Henry, I’m giving you all I have. You’ve given me more than you’ll ever know.

All my love,
Mommy

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 8-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

I also want corporate worship, and my favorite of all is our Taize service.

I’ve attended only twice, but you’d think it was much more, the way I cherish it. My memories hold the music, the silence, the candles, and the contemplation. And, in one memory, I see the glow of a senior citizen I admired for years, surrounded by candlelight, wiping his nose with a hanky as he mouthed a fervent prayer. Oh, I treasure this night and longed to be there again this year.

I had to miss the service. It was exactly where I wanted to be, yet not where I needed to be.

At the same time, a hot-shot, superstar social worker and behavioral specialist was speaking locally about autism and bullying. Students on the spectrum are more susceptible to bullying than students with any other disability. And some are also prone to becoming bullies (“bully-victims”) because they may mimic the behavior. So, it was kind of a big deal for me to be there.

I’m guessing you know what that feels like too. This happens to all of us, parents or not – this wishing we could be two places at once. And it definitely happens a lot during the holidays.

For a parent, the moment occurs when we must choose between the children’s wants or needs and our own, and it’s a tricky thing to know the when and how of this.

In all this talk of self-care and preventing our own burnout, which ultimately hurts our children, how do we discern when to say yes and when to say no?

How do we know when it’s the right time to choose them and the right time to choose us?

This week’s decision was only easy because it involved Henry’s safety. I don’t pretend to know the answers for every occasion in every family. Further, I might need to say yes today, yet no to the very same thing tomorrow or next week. I do know, however, what values I consider when making decisions. Perhaps this list will help you sort through your own.

Henry’s physical safety and emotional welfare. Will this help him stay safe, either now or in the future?Henry’s spiritual formation. Does this help us shepherd his heart?Our needs. Do either of these options meet a need for Henry or me?Henry’s wants. Is his desire in this moment also important for one of the values above?

To put a different spin on it, let’s pretend there was no superstar speaker. Let’s say Henry is in a robotics club and his team had an exhibition night for the parents on the same night as the Taize service. Let’s say he pleaded with me to be there – not just Dad but Mom too. In this case, I need to ask myself these questions:

Will my absence leave a lasting impression on him?
Has missing his special events become a pattern for me or is this a one-time thing?
Has he been particularly demanding of my attention lately? If so, is this an indicator of something else?
How important is this church service to my own spiritual formation at this point in time?

These answers can change from day to day, obviously. While most of us would say, “Hands down! I’m going to be with my child!” we know there could be situations in which tending to our own souls would outweigh the robotics night.

In these sticky situations, perhaps it is best to already have the parameters mapped out in our minds, like my 4 bullet points above. What do you think yours may be?

Might I suggest the following verse as a guide?

He has told you, O mortal, what is good;and what does the Lord require of youbut to do justice, and to love kindness,and to walk humbly with your God?

Micah 6:8

I know my decision this time was based on justice for my son, but the next might simply be kindness toward him. It might be humility. It might even be kindness for myself.

The next time you’re faced with the desire to be in two places simultaneously, how might your decision be wrapped in justice, kindness, and humility?

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New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 8-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

I think it is safe to say that we want our days to count for something. We want our work to produce, we want our parenting to make a difference, we want this Advent season to be more meaningful than the last one or as meaningful. We don’t want to waste our time.

But what are we really saying?

Here is a quote from Oswald Chambers that I think sums it up nicely. He says, “It is ingrained in us that we have to do exceptional things for God — but we do not. We have to be exceptional in the ordinary things of life, and holy on the ordinary streets, among ordinary people — and this is not learned in five minutes.” (My Utmost for His Highest)

Some years ago I wrote that I felt Advent was passing me by, that somehow I had missed something.

No matter what I did or didn’t do, it just didn’t feel like enough. It didn’t feel… I don’t know, special? Holy? I now realize I didn’t understand Advent, much like I didn’t understand Lent. New to liturgy and the idea of a Church calendar, I was enthusiastic in my appreciation of the season and wanted every moment to count.

I think somehow I confused Advent with doing.

Bake cookies for the neighbors!
Take treats to the firemen!
Decorate the tree!
Sing Christmas carols to shut-ins!
Look at lights!
Make a gingerbread house!
Ice skate in the park!
See the Nutcracker!

None of these actions are bad, understand. Done in the right spirit, they are faithful, fun, and festive holiday activities. But none of them have anything to do with Advent – not necessarily, anyway. I would argue even the Christian things can deplete our hope.

And that’s what Advent really is. Expectant, joyful hope.

We’re preparing for our Savior.

I’m an enormous fan of Christmas and love the festivities as much as anyone, but even I must admit that baking cookies doesn’t set my mind on things above. Unless…

Can I share those cookies with someone? Can I somehow share the love of God with them? Hmmm. Maybe this could be an Advent activity.

See, I believe Advent is less about the doing and more about the being. How will you be this season? Will you be joyful, peaceful, and hopeful?

If putting together a gingerbread house creates a family argument, maybe it’s time to stop that tradition.

If you discover no one actually likes the Nutcracker, why go?

If a family devotion wreaks havoc in your home, there is a different way to hide Scripture in the hearts of your children.

Does the Christmas Eve church service send your special needs child over the edge? If so, perhaps it is time to consider what Sandra Peoples* suggests:

The less flexible my child is, the more flexible I need to be. I’m the adult and I have to act like it, even when I’m feeling stressed or embarrassed. That means I may have to bend some of my usual standards to keep the peace.

Advent will truly feel empty – we will have missed it – if we don’t know what it is we’re trying to achieve. We will rush and do and give without meaning and purpose.

So, I ask you this important question today:

What prepares your heart for Christ?

* Sandra’s 5 Keys to a Calm Christmas is an exceptional guide for parents and other relatives who need to understand their special kiddos this season. Sign up here:bit.ly/calmChristmas

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 8-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

“Meredith, what might be some gentle ways to ask for a host/hostess’ help in making a holiday gathering more comfortable for children with special needs? What are the areas where a parent could take initiative to take care of their own child’s needs (such as excusing their child from participating in a chaotic, but long-standing family ritual everyone else loves) and where are areas where it is reasonable to ask for some modifications (such as a request to play soft and soothing Christmas music vs. Alvin and the Chipmunks).”

This is such an important question that honors both the child and the host. My goal is always to advocate for Henry (and teach him to advocate for himself) while maintaining respect and kindness toward others. That desire is what I hear in this inquiry.

Let me preface my suggestions with the disclaimer that I realize only you can know the best approach to take with your family. Family dynamics are unique, and what works for us may not work for you. Please know my intent is to help you provide peace for all involved, never discord.

Additionally, the right tone and word choice can go a long way with fostering mutual respect and demonstrating your intent. You are not responsible for another person’s interpretation, but you are responsible to speak with love and clarity. Convey that your child’s needs are real and that the right accommodations will benefit everyone – not just your child. With that said, I would consider these reasonable requests:

Ask for an idea of when food will be served so that you can prepare your child. Example: “Hi, Cindy! I’m preparing a schedule for Johnny. Any chance you can tell me the approximate time we’ll have dinner? Will we have a special blessing or toast beforehand I should tell him about? Thanks so much; this really helps him feel excited instead of anxious about the holiday!”

If you need to prepare special food for your child, make sure to let the host know you will take care of it so as not to burden them.

Ask if there will be guests who are unfamiliar to your child.“Hey, Dad. I’m showing Sally pictures of all her extended family and reminding her who will be at Christmas dinner. Do we have any special guests or friends coming? I’d love to tell her their names beforehand.”

Let the host and other family members know the specific situations in which your child may experience discomfort, pain, or emotional fatigue.
For example, if your child has sensitivity to touch, he may not appreciate hugging.

If longstanding traditions have been uncomfortable for your child in the past – or if you suspect they will be – let your family know that your child may need to separate herself from the crowd for brief periods of quiet and decompression.

If the host or other family members offer to change a tradition for your child’s benefit, gratefully and graciously accept. This is not the time to be a martyr or to be prideful.

Finally, it is always appropriate to ask how you can help the host/hostess. At the least, you have shown kindness and courtesy. At best, this request can open the lines of communication and may give you an opportunity to share what will help your child. For example, the host may enlist your assistance in preparing a calm environment. (Create a quiet zone, tone down the table decorations, avoid smelly candles, etc.) She may even offer to prepare your child’s favorite food or change the music. (No more Alvin!)

I hope these suggestions are helpful for you and create more peace and joy this season! Do you have great tips too? Please share them in the comments or on Facebook.

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 8-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

You may have noticed I’m in favor of empowering the disenfranchised and remembering the forgotten, even for something as trivial as Halloween. I encourage parents of neurodiverse children to tackle the holiday in non-traditional ways.

But guess what?

If your children with autism or sensory processing disorder DON’T WANT to participate in Halloween activities, that’s ok too.

Yes, really.

It’s not a requirement of childhood to wear a costume, to ask neighbors and strangers for candy, to take a hayride, or go to a carnival. It’s not. If your kids are making their own fun or even treating Halloween as an ordinary day, then pat yourself on the back for giving them the space to do what they need.

This – allowing them to do their own thing – is usually harder for the parents, who grieve what they feel their family missed. What we tend to grieve are our expectations, not our reality. Allow yourself the grief, especially if this is your first set of holidays post-diagnosis. It is normal and healthy to grieve and there’s no timetable for how it’s done. Let yourself feel it. Don’t squash it. And then… one day… it won’t sting anymore or will sting less sharply. The beauty will be stronger than the grief. Remember, love is stronger than hard.

“You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence. … We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you.” – Jim Sinclair in Loud Hands.

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 8-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

If your children with autism or sensory processing disorder WANT to participate in Halloween activities, there is no reason why they can’t.

Yes, really.

Your Halloween might not look like your neighbor’s or your best friend’s or even your own from childhood, but that doesn’t mean it’s less special to your child. Find out what your child wants to do, and then:

1. Prepare, prepare, prepare.
* Let them choose costumes that make them feel good. Superhero pajamas, a favorite hat, or even their favorite regular clothing are just fine. (Note: I hope no would make an ugly comment to a child not wearing a costume, but if they do, you have the opportunity to kindly educate! If you don’t want to use words, you can silently hand them an informational card. Don’t forget a smile.)
* Practice the words or signs to use.
* Talk through what to expect, if this is their first time.
* Make or find a social story.
* Act out the plan with their favorite toy. (Use dolls, action figures, trains, cars, blocks, crayons – anything can have a “voice”!)

2. Plan an escape.
* If traveling by car, don’t hold yourself hostage to another person’s timetable. Drive your own.
* Know the layout of where you are going (carnival, festival, neighborhood, etc.) so you can quickly get to a “safe zone” or your car.
* If your children seem nervous or hesitant, assure them that they can stop/leave at any time.
* Have comfort items on hand for decompression.

How does your family do Halloween? I’d love to hear! Leave it in the comments or drop me a line at meredithdangel(at)gmail(dot)com.

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New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 8-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.